This is not a back to school post

But, oh how I wish it were.

Seeing all of your beautiful, healthy, smiling children today was both heartwarming, and heart wrenching. Only for the fact that my children aren’t doing the back to school thing today and, as a result, I was hit with waves of sadness and jealousy.

Elijah will be returning to public school, but as he is still in Ontario, he is missing his first week of Grade 2. So, expect that back to school photo next week. Cody has already agreed to take it for me.

In the mean time, Elijah is having a blast. So is Elliott. They are getting so much time with their cousins and aunts and uncles, great aunts and great uncles, grandparents and great-grandparents that they otherwise would not have had. Judging by the photos I get sent daily, the boys are having an awesome time.

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What was hard about today’s back to school photos was being forced to remember that Ezra is not going to Kindergarten. Ezra was that kid who couldn’t wait to go to school. While Elijah would have been happy to do another year at home, Ezra wanted out. Ezra wanted to make new friends, learn all his letter sounds, and figure out how to read.

Ezra will still learn all those things here with me, and he may even make some friends in the cancer ward. But that’s not exactly what we had hoped his first year of school would look like.

As a general update on Ezra, he’s had a pretty good day today, and a pretty good last week. We were at the hospital for an appointment for most of the day today. Our third chemo day as an outpatient. I find these days frustratingly long as there is a lot of waiting around, but I guess that’s not totally unexpected in the world of medical appointments.

After his appointment, Ezra was his usual happy, funny, and chitter-chattery self. He talked all the way home and even decided he could walk from the car to the elevator. While not a long walk for you or me, it was much longer than anything he’s done in over a week. So, that was nice to see.

You may also notice Ezra’s face is considerably larger. He is also larger in his torso. That rapid change is being caused by some of his medications, and the obsession with food the steroid he is on has caused. We have been reassured his face, and body, will return to its normal size, eventually.

I also cut his hair on Sunday. He didn’t want me to shave it right off, as he is firm on wanting his hair to just fall out. But, we were able to compromise and cut it much shorter. This has made all the hair on his pillow, and anywhere else he sits, much less noticeable. It was starting to look like we had a pet cat.

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Today at the hospital we were just about to leave when Ezra said, “See mom, I am going to be like that kid.”

I first started to look around cringing at what I might discover he was pointing out. In paediatric oncology there’s all kinds of new things to see and explain.

Thankfully the boy he was pointing at was just another bald cancer patient. What Ezra meant was that he was going to be bald, like that boy.

I took this as a good step in the direction of acceptance. Ezra has been anxious about losing his hair, and understandably so. The kid has never been bald. He was born with a full head of dark hair and two very dark eyebrows.

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  Baby Ezra

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Baby Ezra

Before anyone else asks, no, Ezra does not want you to also shave your head. But, thank you for offering.

When he was told he would lose his hair, it was explained to him that unlike older men who lose their hair and then are bald forever, Ezra is young and his hair will grow back.

Ezra understood this to mean that anyone older than he is runs the chance of being bald forever. He has even woken up twice in the middle of the night to tell me to make sure Cody does not shave his head. He won’t even let Elijah get a really short haircut. He is firm in his decision that no one else needs to go bald.

So, family and close friends, do not fret. You will all get to keep every hair in your head. Ezra does not wish for anyone to join him in being bald, if being bald is at all avoidable.

An intro to outpatient life

We have now completed our first week with outpatient appointments.

Ezra’s first appointment was on Monday and that day could not have come sooner. As I mentioned before, Ezra had been experiencing extreme abdominal pain. On top of that, we ran out of the only pain medication that worked on Sunday afternoon.

Sunday night was rough.

Ezra and I arrived at 4E2, the paediatric oncology outpatient ward, exhausted. Ezra was also next level grouchy. Yelling at any nurse who dared ask him any question at all.

At one point, during a dressing change for his PICC line, there were three hospital staff around him, and I was at the side of his bed helping to hold him still and offer any kind of calm presence he would accept. Well, Ezra was not pleased and he let us know. At one point he yelled “Get away from me you stupid doctors.”

Insert me, the cringing mom trying to apologize to the hospital staff, while gently correcting her very exhausted and steroid raging five-year-old’s language 😬😳

Ezra got through the rest of his appointment without getting any meaner, and thankfully that was the low point in our week so far.

We got a new prescription for pain medication but haven’t had to use it. It turns out the majority of Ezra’s pain was in fact caused by constipation, a problem that is no longer plaguing him.

On Wednesday we even got out for a walk, and a “stroll,” as Ezra would say.

Because Ezra is so weak right now, I asked to have my BOB Revolution Jogger brought to the city. With a weight limit of 70 lbs, this seven-year-old stroller is more than capable of handling Ezra. Over the years I have been grateful we chose the stroller we did, and this past week I was once again so grateful. It has handled our needs with each new addition to the family and now, when I thought my kids were past stroller age, it is proving to be even more invaluable than ever.

So, on Wednesday I walked and Ezra “strolled.” On that walk Ezra commented on how good the fresh air felt. He also smiled for a picture, and was so kind and sweet. It was so nice to have a small glimpse of my boy during that walk.

We have spent lots of time building various LEGO things this week. It’s nice to see Ezra actually want to take part in the building instead of just asking Cody or myself to do it all for him.

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Then, on Thursday we were back at the hospital for more chemo. While the day was so much longer than I expected, everything went well. Ezra was in a much less hostile mood and while he still isn’t much into visiting with the nursing staff, he also didn’t call anyone stupid. So, hallelujah for small steps in the right direction.

Food, glorious food

“Is meat fruit? I think meat is fruit. It doesn’t have seeds, but I still think meat is fruit and I should be allowed to have some.”

This is just one of the funny things Ezra has said in his pursuit of another snack. This steroid is no joke. The kid literally was writhing in pain because his stomach was too full, he was experiencing constipation, and he would still ask for more food in the short breaks he would get between stomach spasms.

His stomach pain is not entirely from overeating though. The steroid can cause stomach irritation and Ezra currently has no neutrophils in his blood. Neutropenia can cause an irritation in the mucus lining of the stomach, in addition to being responsible for making it impossible for Ezra to fight off any illness or infection.

If you thought the risk of infection from a dirty cut was stressful, try bringing your son with no neutrophils into a world where people still dispute the science of COVID-19 😬

So, yes, even though the Alberta Government seems rather relaxed about COVID, our family is back to wearing masks in public. We will also need to implement strict rules in our home (both in Grimshaw and our temporary home in Edmonton) about who can come in and who can enter into Ezra’s space. There are risks we must take, and cannot control, in our daily lives at work, school, daycare and the hospital, but we can control the risk in our home.

A fever now means an immediate trip to the Emergency department. Even the common cold is a risk for Ezra. When we were told that Ezra would be able to go to school this year, it was qualified with the following statement: “But, if there is a child in his class with a runny nose, Ezra and that child cannot be near each other. Either Ezra or that child will have to go home.”

Elijah’s Kindergarten class in Grimshaw had 50 kids. I have no idea what the class size was looking like this year. But, let’s just say it was the same. My aunt, who is a teacher, laughed when I told her this. She said exactly what I was thinking. In a class of 50 five-year-olds, someone is going to have a runny nose every single day.

For us, there’s no such thing as “just the sniffles” anymore. For this reason, Ezra will do his Kindergarten year at home with me. I thought I had hung up my homeschooling mom hat. I celebrated hanging up that hat. But life has a funny way of forcing you to pivot and make other plans, quickly.

But, enough about runny noses and other ailments. Let’s get back to Ezra’s pursuit of another snack. His current preference is for savoury foods. He is not interested in candy or sweets at all. His cravings are so intense that just now, he rolled over from a dead sleep and told me he has decided he wants a ham sandwich for breakfast. I reassured him I could make him that and he said “Thank you Mommy, good night.” He is now soundly sleeping again.

We often remind him he needs to take a break between his snacks. But his requests are persistent. This afternoon I told him he needed to wait one hour until he could have something else. I gave up after 45 minutes and about 20 requests for food.

Another funny thing Ezra has said in a moment where he has accepted that he will not get any more food for a little while is: “I know my belly needs a break, but I am just going to tell you everything I want to eat.”

The list was long.

Elijah started calling people who were overweight “puffy” some time ago, I think because he thought it was a more kind describing word. Regardless of why, it’s become a thing in our house. When Ezra first realized how much he wanted to eat, he turned to me, smiled big, and said with excitement, “Mom, I think Elijah is going to think I am a puffy man.”

Stomach aches and spaghetti

When Ezra told me last night he wanted noodles for breakfast, I was sure he would change his mind by morning.

But, I should have known better than to underestimate those steroid cravings. The kid sat up, used the washroom, plunked himself on the couch and asked me for his breakfast noodles.

Good thing I was prepared for this request. Yesterday I made a batch of the garden bolognese from Fraiche Food, Full Hearts. It is full of vegetables, something Ezra’s diet has been lacking. This morning I cooked the noodles, added the sauce, and voila, breakfast was served.

The last two mornings Ezra has woken up appearing considerably better than he is when he goes to sleep. But, by about noon, all hope of a better day is usually lost.

The steroid he is on is causing all kinds of side effects in his little body. For many of these side effects he is already on other medications. Some of those medications have side effects as well, which he is then fighting with other medications. See the vicious cycle?

All I know is that the steroid better be doing it’s job for all the pain it’s causing.

I did call the hospital last night to check on some of Ezra’s most painful symptoms. The oncologist reassured me that everything he was feeling sounded normal, and while definitely uncomfortable, not unexpected.

Let me tell you, knowing your child has cancer is one thing. Watching what the drugs, that are meant to fight that cancer, are doing to his body is a whole other thing.

Cody and I both feel so helpless because we can’t take his pain away. His discomfort is relentless and Ezra shuts down when he’s most frustrated. It’s a big guessing game at times when we are trying to figure out what part of his body hurts, how it hurts and then how best to treat it.

For those looking for ways to specifically direct their prayer: Please pray Ezra experiences some relief from these painful side effects. Please also pray that we may be able to figure out how best to manage the pain caused by all of these side effects.

It is well, with my soul

Today I received a thoughtful gift from a dear friend, a journal with a gorgeous cover. The cover read “It is well with my soul.”

I have also been using a mug I bought some time ago and had shipped to Ontario. My mom brought it out to me when she was here, as I obviously would not be heading there. The mug says “Turn your eyes upon Jesus.”

These two hymns are two of my favourites and I know God is speaking to me each morning with the timing of these lyrics in my daily routine.

This morning was hard. Ezra woke up at 6:30 and he was obviously not okay. I did get medications into him between 7:30 and 8, but nothing was picking up his mood.

He’s incredibly weak. A video his uncle posted of him fishing on the July long weekend brought tears to my eyes. It still blows my mind that Ezra really did get this sick in under a month. In that video Ezra was giggling and jumping around, trying to touch a fish that he had just caught. He was behaving like a happy and normal five-year-old boy.

Today he’s moaning when he’s most uncomfortable, he’s walking a bit stiff because his joints hurt, and he can’t walk far without needing a break.

Our spunky little boy is still in there though. He smirks when he farts, he is building a LEGO jungle when he feels up to it, and he’s passionately eating pizza. That’s right, the steroid cravings have moved on from Wendy’s Jr Bacon Cheeseburgers to pizza and pasta, and all things protein. This morning for breakfast he had a ham sandwich, followed by eggs and sausage for lunch and pizza for dinner.

LEGO with Dad

We are grateful he is eating, but now we just need to get a few vegetables into him.

Another friend stopped by for a quick visit this morning. I was grateful for the chance to go for a walk outside and just speak freely. I remarked to her that through all of this, Cody and I know we are being carried by an army of angels.

We were devastated and shell-shocked after hearing his diagnosis. But it wasn’t long before our home community and our faith community rallied behind us. It’s because of all the prayers said on our behalf that, beyond that first 48 hours, I have never felt alone. I have never been terrified regarding Ezra, and I haven’t worried continuously about what comes next. In those first 48 hours every single one of our largest needs were met by the generosity of others. In the next 48 hours many of our smaller needs were also met. Then, over the next days people have continued to show up for us in meaningful ways. For all of this, we are beyond grateful.

So, it is with gratitude that today I can end my day knowing that it is well with my soul because I have turned my eyes upon Jesus.

Out and on our own

It’s the evening of August 16 and I am happily writing this post from the bed in our borrowed condo.

Ezra was discharged today at about 2 p.m., after having his dressing changed on his PICC line (super traumatic, he did not enjoy that one bit), and getting his pain medications sorted out.

It turns out Ezra, like Cody, is resistant to morphine. This means that a dose that should take his pain away does very, very little to absolutely nothing at all. We tried a new medication last night, and it was a night and day difference. He was finally pain free.

After picking up some groceries, I made our first home-cooked meal in 11 days. It was just spaghetti with a bunch of added vegetables, but it was delicious. Upon seeing his bowl, Ezra did ask me why I put things in the sauce that he does not like (the vegetables), but once he started eating, he didn’t appear to mind at all. He finished his portion and even asked for seconds.

After dinner Ezra did finally succumb to the pain he had likely been fighting all day. Because Ezra does not like to take his medications, and because the morphine was hugely ineffective, he hasn’t figured out that there are some medications that can actually make him feel better.

His strongest and most effective medication is still an opioid, so we are being careful about how much we give him. I decided today to let him tell me when he needed it. The only problem with that plan was that all day he kept denying he was in pain. As his mom, I knew that wasn’t the truth but wanted to honour my promise to not force him to take anything that wasn’t absolutely necessary.

After he finished supper I told him the pain medication was no longer optional and had become necessary. He wasn’t happy about that, but about half an hour later he was a totally different kid. Happy, playing games, polite, and telling jokes.

I may need to rethink my strategy on the optional pain meds.

A bath and a few games on the Nintendo Switch made Ezra’s first night in the condo a good one. He is now tucked into his own bed surrounded by the mound of stuffed animals that have been gifted to him in the last 11 days. Each one is such a welcomed expression of love and support, and Ezra is thrilled to have so many buddies with him in Edmonton.

We also gave Ezra the gifts that had been sent from home when Cody returned to Edmonton on Thursday. He was so pleased with all of the cards and well wishes and is happy to have a few of his own toys to play with here in Edmonton. Thank you to each of you who took the time to put together something that would help make our little guy smile.

A special gift from Grumpy

Since his admission to the Stollery, Ezra has received A LOT of different things. But, perhaps the most special is Grumpy.

My parents flew to Edmonton on Wednesday and snuck in a quick visit with me that evening. When I met them they had an envelope full of love and support from Ezra’s cousins, family friends and my Rehoboth family. What a blessing that was, and each and every note and card was so encouraging. Thank you to each of you!

Mom also had Grumpy, a stuffed version of one of Snow White’s dwarves. Grumpy was pre-loved by my grandpa, Ezra’s great-grandpa Shannon. Grumpy was actually gifted to Grandpa 30 years ago by his own grandchildren and he has treasured it every day since. You see, Grandpa’s nickname is grumpy, so it’s fitting.

When Grandpa Shannon heard about Ezra, I was told by mom that he went to go get Grumpy and said he wanted Ezra to have him, since Grandpa wasn’t able to come here himself to give Ezra a hug. Living provinces away means Ezra has not had too many visits with Great-Grandpa, but connections have been made and Ezra also giggles every time he remembers playing with his Great-Grumpy on our Ontario visits.

Toy Grumpy is also very fitting for Ezra right now because, well, ‘roid rage is a real thing.

My parents lovingly cared for Grumpy on his trip from Toronto to Edmonton and photographed the whole journey. Here is a photo collage of Grumpy’s trip from Great-Grumpy to Ezra.

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When Grumpy finally arrived at the Stollery, Ezra was probably at his worst. He was experiencing pain that had yet to be well-managed. He was grateful for the gift, but it was hard to smile.

Ezra and Grumpy…and a cheeseburger

I was able to get a couple of other photos where Ezra thought he should give a grumpy face.

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Thank you Great-Grumpy for sharing your special toy with Ezra. I think it will be an awesome thing to have to remind him of all the love coming from Ontario on this long journey.

Brothers (briefly) reunited!

One of the hardest parts for me, as a mother, in all of this is not being able to be in more than one place at one time.

I also distinctly remember telling my boys that when they were all asking me for different things around the house pre-cancer diagnosis, but it’s taken on a whole new meaning now.

I legitimately will not see my house until maybe middle of September. I left it on August 6.

Until this weekend I also worried about when I would be able to physically be with Elijah and Elliott. Their lives have been turned upside down too, and they have even fewer choices than Ezra does.

When my friend Ashley suggested over the phone that she was willing to come and get the other boys and fly them to Ontario, I laughed and was so touched. You see, Ashley is a nervous flyer, and to fly to Edmonton and back again with two children that were not her own would take a great deal of bravery.

A little while later that same morning, when speaking with my mom, she had the same idea. She suggested that she and my dad could fly to Edmonton and take the other two boys back to her house for a couple of weeks of fun with their Ontario cousins and friends.

Cody got on board with the plan, and flights were booked. My parents arrived in Edmonton on Wednesday, August 11 and Cody brought the other two boys from Grimshaw the next day. We all then got to meet with Ezra for a few minutes outside the hospital. It was brief but it was what everyone’s hearts needed.

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Elijah looked hesitant and unsure, which was exactly what I expected from him. We had a person from the Child Life department talk with the boys to help explain what was going on inside of Ezra’s body. I wasn’t sure how much Elijah really took in until he made some comments later. The most important bit was that Ezra cannot make anyone else sick, so we don’t need to be afraid of giving him hugs or playing with him.

Elliott must have taken that to heart as he spontaneously gave Ezra no less than three or four hugs while we were all sitting there.

Mom and Dad, Elijah, Elliott and I then stayed in a hotel Thursday and Friday night before they headed back to Ontario this afternoon. We went swimming, spent some time at a park and splash pad and just generally enjoyed being together.

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On the first evening in the hotel, after everyone was sleeping, Dad got up to use the washroom. I don’t remember it but I guess I sat up as he walked to the washroom and asked him if he was okay.

“You then said, ‘Oh it’s you,’ and went back to sleep,” he said.

The next time he got up, I actually followed him to the washroom, opened the door (just a little bit, no things were seen that cannot be unseen 😉) and said, “Ezra? Ezra, are you okay?”

Dad quickly confirmed he was fine and I walked back to my bed, and turned to my mom and asked her where Ezra was. Mom said she could tell I was maybe sleep walking and was afraid I was starting to panic and was going to hurt her. Good news is that whatever she said snapped me back to reality, I said Elijah and Elliott’s name and remembered that I was not in the hospital.

We all had a good laugh about this the next morning and Dad said he was sure he had been super quiet, but I guess not quite quiet enough to escape my heightened mom-hearing.

It’s also amazing how quickly a week of caring for a very sick child can train your mind.

Dad happily reported on Saturday morning that I left him alone when he used the washroom on the second night. 😆

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I am now back at the hospital with Ezra and we are aiming at being discharged on Monday. Cody has gone to the condo we have been gifted the use of while we need to remain in Edmonton, to sleep and to get things ready for Ezra and I to move in.

We had hoped to go on Friday already but Ezra developed some severe pain in his jaw and throat, a known side effect from one of his chemo medications. We finally got that pain managed on Friday, and now we are working on consuming enough water and taking medications orally. Ezra gets pretty worked up when a new medication arrives in his room. I don’t blame him, there’s lots, and very few taste very good. But he’s getting braver and more accepting and we are working on routines and rhythms that help him feel in control of how he is taking his medications. He doesn’t have any control over much of what is happening to his body, so this is one way we can let him have some choice…as long as that choice gets the meds into his body, eventually.

I would specifically request that those praying would pray that Ezra conquers the anxieties he feels around taking his oral medications. There are many that he will be taking for a long time. We also request prayers that he may be more open to learning how to swallow pills, and finally that the side effects he is currently experiencing will either dissipate or remain managed.

Showers, vacuums and cheeseburgers

Despite being so sick, Ezra still says some of the funniest and most honest things. Some of them are not funny in the moment, but are after the moment has passed.

For example, a couple of nights ago he, very clearly and in a very loud voice, said “Mom! You stink. You need to shower tonight.”

Gee, thanks kid.

Nevertheless, I followed his advice and showered after he went to bed. The next morning I walked past his bed and he said “What’s that nice smell? Oh I know. It’s you. You must have showered.”

😏 I guess I really did stink.

This vacuum (which is replica of mine at home) is his favourite toy. Go ahead, tell me you miss your home, without actually telling me you miss your home.

He also now wakes up begging for cheeseburgers. A steroid he is on as a part of his chemo plan creates insatiable cravings and Ezra has set his sights on cheeseburgers and chips. So, his entire day is focused on when he can get his next “fix.”

This same steroid is responsible for the pretty intense jaw pain he is currently experiencing. As a result of the pain he can’t eat anything, and sometimes even has trouble swallowing water.

So, imagine a kid who is on a drug who makes him dream all day long of eating…and that same kid having so much pain that he cannot physically chew or swallow.

For two days he lamented frequently his inability to eat his beloved cheeseburger. Then, the right combination of meds took just enough of the pain away.

The smile he had on his face while eating that burger was the biggest I had seen in a week.

So while we are trying to get him to eat other foods, for now my spunky little guy is living off cheeseburgers.

A look at how leukaemia snuck into our lives

We have heard a few times that people were shocked to hear of Ezra’s diagnosis because he had previously looked so healthy.

Ezra is a sturdy kid, who has always had a darker skin tone than the rest of us. This means he’s got that healthy sunny glow even in the dead of winter, especially when compared to his brothers. Where we live winter can last close to six months. There’s plenty of time to get very pasty.

He’s never been sick and we have never had to make middle-of-the-night emergency room trips with him. We have with the other two.

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When we thought he had a very severe case of strep, Cody and I joked that Ezra waited to get sick until he could get really sick.

…little did we know how true that really was.

Ezra’s symptoms appeared in the afternoon on Sunday, July 25. Cody noticed some spots on his stomach that were strange. At first glance it was a rash, but it wasn’t raised and looked like burst blood vessels. Cody was concerned, more so than I was, and he took Ezra to the ER in Grimshaw that evening.

At that point Ezra had no other symptoms. He had complained on and off for the previous couple of weeks of a sore stomach, but nothing persistent. After checking him out and doing a urine sample, the doctor sent Cody home, explaining that it was likely a viral infection and we should come back if the rash did not resolve itself by Friday.

Just two days later, on Tuesday, July 27 Ezra’s spots had grown to now cover the inside of his arms, his legs and his neck. He had developed a cough and a sore throat. He was taking big naps that were not disrupting his evening bedtime and he complained more persistently of a sore stomach. He was also eating less at meal times because of his stomach pain.

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I took him into Grimshaw ER that evening and the doctor took a look at his throat, did a swab, and said it was strep. He prescribed an antibiotic and we were on our way.

The next morning the pharmacist told me that the antibiotic may bug Ezra’s stomach, and that we should try to give it to him with food.

For the next nine days we struggled to get Ezra to take his medication and often had to give it to him without food. He wasn’t eating much. And, while his sore throat had gone away and the spots had not gotten any worse, his stomach hurt a lot, he lacked energy and was still taking those huge naps.

Then, when giving him a bath that night I moved his hair off his forehead and discovered a large bruise. I couldn’t remember him hitting his head and neither could he. If I told you that I remained calm in this moment, I would be lying to you.

As we were preparing to leave town for three weeks, Cody and I agreed he needed to go back to the hospital. It wasn’t long before the doctor made it clear to Cody that we were not in fact leaving town for three weeks.

Cody told me I needed to come to the hospital because they were going to fly Ezra to Edmonton and Ezra wanted me to go with him. So, we called Cody’s mom in the middle of the night to stay with the other two while we were at the hospital. When I got there the doctor said we needed to go to the waiting room to have a talk.

If a doctor wants to have a quiet talk with you, you can almost always assume it’s not a simple diagnosis.

“Ezra is a very sick little boy….his white blood cell count is 200…it is likely he has a cancer in his blood called Leukaemia.”

My head dropped and the tears came. I had had an inkling in my heart that Ezra’s symptoms were pointing to something much, much bigger than strep, but I had ignored them. I told myself to stop jumping to the worst case scenario and trust that the antibiotics would do their job.

We also learned that the throat swab done on July 27 had come back negative for strep. Ezra never had strep.

Countless people, nurses and doctors, have since reassured me that ignoring his severe symptoms for over a week was not out of the ordinary. One nurse here at the Stollery told me that the terrible thing with leukaemia is that many of its symptoms are not extraordinary. A sore throat, an upset stomach, fatigue. These things could be any number of viral infections in children. The spots should have been investigated further, but it is possible to develop those spots with strep.

So, that is how he went from perfectly healthy to receiving chemo therapy in under a month. If I had any word of advice for all parents coming out of all this, it would be to not ignore your instincts. While the doctors and nurses are the experts in their field, you are the person who knows your kid the best.